“I’d love to move out on my own but I got turned down for benefits because of the criteria. The only ones that seem to get it are the ones that are wheelchair-bound or totally bedbound. I’m kind of in the grey area where I’m not fit enough to work but not entitled to benefits.”
The quote above is from a woman with Fibromyalgia (FM) who was interviewed for my PhD research.
FM is a condition that is characterised by chronic widespread pain and fatigue, but people with this condition often experience a range of other symptoms as well, including headaches, dizziness, lack of concentration, and bladder and digestive issues. All of these symptoms are “invisible” and medically unexplained, meaning they cannot be confirmed through medical technology or traditional diagnostic procedures. FM and similar conditions have been described as “contested illnesses,” and they are often difficult for medical professionals and lay people to comprehend.
My research based on interviews with 31 people with FM in the UK and Canada found that due to the in/visibility and the contested status of this condition, people with FM encounter various barriers trying to secure disability-related entitlements.
People with FM are often deemed undeserving of receiving disability-related entitlements, because this condition falls in the “grey area” of policy criteria. The interviews reveal that entitlement policies in the UK and Canada are written so that a “disability” or illness must be medically verifiable, “severe,” on-going and long-term in order to qualify, which is problematic for people with FM who have a medically unexplained, fluctuating and non-visible illness. Due to this strict policy criteria, the participants explained that the process of claiming entitlements often requires a great deal of time and resources, and it is often necessary to get advice from experts in order to have a successful application. This still did not guarantee that their application would be approved, however, and many of the participants explained that they had been denied entitlements.
The participants that did manage to secure necessary entitlements found that this often subjected them to scepticism, surveillance and policing. In the workplace this meant that some of the participants had to engage in a “balancing act” to prove that they were “disabled enough” to deserve workplace accommodations, but not “too disabled” that they could no longer work. The vulnerability attached to making FM known/visible in the workplace was clearly reflected by those participants who were deemed to be “too disabled” to continue to work. Some of the participants explained that they were forced to resign or were made redundant following disclosure and the request for workplace accommodations.
In addition, the scepticism and surveillance experienced by many of the participants was also related to the economic and political climate in both countries, but especially in the UK. While all disabled people are in a similar disadvantaged position within this austere context, the research suggests that people with “invisible” and contested conditions might encounter greater obstacles when proving they are worthy of entitlements. Many of the participants’ voiced concerns regarding the likelihood of continuing to receive workplace accommodations in a “tightening” job market and the possibility of their benefits being taken away due to the “overhauling” of the benefits system.
Finally, many of the participants who were not receiving disability-related entitlements explained that they chose not to apply due to the perceived difficulties of securing and maintaining entitlements, and due to concerns over anticipated negative reactions, including scepticism and judgment regarding their (un)worthiness of receiving these entitlements.